Regional differences in Canadian patients with BRCA1 or 2 - Metcalfe et al

Submitted by Dean Giustini on August 15, 2007 - 00:22
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The editors at Open Medicine are pleased to announce the publication of the following study of 672 Canadian women with either BRCA1 or BRCA2.
"Variation in rates of uptake of preventive options by Canadian women carrying the BRCA1 or BRCA2 genetic mutation" [pdf file]
Authors: Kelly A. Metcalfe, Parviz Ghadirian, Barry Rosen, William Foulkes, Charmaine Kim-Sing, Andrea Eisen, Peter Ainsworth, Doug Horsman, Christine Maugard, Diane Provencher, André Robideaux, Dawna Gilchrist, Albert Chudley, Edmond G. Lemire, Susan Armel, Amy Finch, Ping Sun, Steven A. Narod.
Background: Women with a BRCA1 or BRCA2 genetic mutation have several options for cancer prevention, including prophylactic surgery, chemoprevention and screening. In this study we report on preventive practices used by women with and without breast cancer and examine differences in their selection of preventive practices according to geographic area in Canada.

Methods: Canadian women with a BRCA1 or BRCA2 mutation were followed after genetic testing and questioned about their preventive practices. Women reported on uptake of prophylactic mastectomy, prophylactic oophorectomy, tamoxifen or raloxifene usage and screening practices. We analyzed the uptake of each preventive option and completed a subanalysis according to the geographic area in Canada where genetic testing was provided.

Results: The study included 672 women. Follow-up questionnaires were completed after a mean of 4.0 years (range 1.6–9.1 years). Of the 342 women without breast cancer, 72 (21%) had had a prophylactic bilateral mastectomy. Three hundred and sixty-three women (54%) had had a bilateral prophylactic oophorectomy. Seventeen (6%) of the 270 women without breast cancer who had not had a prophylactic mastectomy took tamoxifen, and 12 (4%) reported taking raloxifene. Of the 342 women without breast cancer, 157 (46%) had not undertaken any cancer prevention option (mastectomy, oophorectomy or treatment with tamoxifen or raloxifene). Sixty-five (39%) of the 167 women from Ontario, 19 (34%) of the 56 women from Western Canada and 73 (62%) of the 119 women from Quebec had not undertaken any preventive procedure.

Conclusion: Significant differences in the uptake of preventive options by women with a BRCA1 or BRCA2 mutation were observed across 3 regions of Canada. Future research is needed to explain why these differences exist.

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I have had DCIS in both breasts (4 years apart) treated with lumpectomy followed by 6 weeks of radiation each time.  I have also been taking tamoxifen for 4 1/2 years, although I was not ER or PR positive.  Subsequent genetic testing indicates I have BRCA 2.  You do not state in your results, the number nor percentage of women who opted for bi-lateral mastectomy in a situation such as mine.  I had a prophylactic oophorectomy and hysterectomy upon learning the results of genetic testing.  I have been unable to find ANY reference to how women in my situation proceed.  Doctors, of course, all say "it's a personal decision", which really doesn't help too much.  If you have any facts/figures on such a situation, I would greatly appreciate knowing how other women decided which course to follow -- bi-lateral mastectomy or due diligence.